leukaemia

Mrs Justice Maye, Royal Courts of Justice, The Strand, aka My Lady, is 59, childless, a much respected High Court judge and concert-level pianist. Her days are dominated by a relentless workload and the endless responsibility of forming judgements in the Family courts. Humdrum divorces and decisions relating to child protection run cheek by jowl alongside seriously challenging high-profile cases fraught with moral challenges.

A strict Chareidi marriage is broken when the wife seeks to educate herself and base family life on reality not religious tradition. Thirteen years together, the arranged marriage, cultures, identities, aspirations, family relationships, loyalties, all are called into question. Fiona’s heart goes out to the two little Jewish girls caught in the crossfire.

Conjoined twins, infant sons of Jamaican and Scottish parents, one potentially viable, abnormally thin from the effort of sustaining two bodies, the other a fattening shell leeching off his brother, become the focus of a battle that has the world on tiptoes watching. On one side, the hospital, masked surgeons at the ready poised to save the life of one of the boys. On the other, religious conviction refusing to sanction murder, preferring to let both boys die rather than risk reinterpreting their rigid code. Fiona’s decision will become the purview of newspaper columnists, taxi drivers, the nation at large, all clamouring for justice and right, vociferous, all certain of their own angle on what that right is. But what is the solution?

A seventeen-year-old boy, with leukaemia, urgently needs a blood transfusion, without which he will die within days or, worse, survive with grossly disabling impairments. But the patient himself, Adam, and his parents, are devout Jehovah’s Witnesses; they will not compromise their beliefs even if it means he will lose his life. Fiona knows the world is watching and will judge her decision. She takes the unorthodox step of going to visit the lad in hospital, a meeting that will have a profound effect on both of them. I won’t spoil the book for you by spelling out the consequences.

As if this wasn’t all a burden big enough for anyone to carry, Fiona is dealing with a major domestic crisis at home. How can she keep the professional and the personal from encroaching on each other? Which takes precedence?

This story, The Children Act, nudges against my own field of interest, the philosophical and moral points interweaving with the legal decisions. Exactly the kind of issues I’ve debated long and hard. Replicas of the kind of cases I’ve followed closely in real life. But Fiona herself is steeped in precedent and the finer points of legal argument, well trained, very experienced. She’s quick to make the distinction: This court is a court of law, not of morals, and our task has been to find, and our duty is then to apply, the relevant principles of law for the situation before us – a situation which is unique.

This is author Ian McEwan at his best. Giving us a fascinating insight into a legal mind toying with the niceties of various options, arguments and counter-arguments, balancing emotional responses against professional duty. A mind that must cut through the various moral claims and determine the one course of action that will remain defensible under minute scrutiny, robust enough to become, at least in part, legal precedent in the future. And sometimes, where every choice has a downside, be bold enough to choose the least undesirable outcome, the lesser evil. Even, in extremis, be courageous enough to find argument in ‘the doctrine of necessity’ – an idea established in common law that in certain limited circumstances, which no parliament would ever care to define, it was permissible to break the criminal law to prevent a greater evil.

Small wonder that some of these cases haunt Fiona, leave her agonising internally, shrunken to a geometrical point of anxious purpose. She’s famed for her elegant summations, her cool detachment, her wise decisions, but even so, on occasion, she agonises retrospectively about her exact phrasing, her final judgement. And never more so than when she becomes involved with young Adam, only weeks from his eighteenth birthday, who is determined to hold fast to his religious heritage – even unto death. These cases leave scar tissue in the memory. They also attract opprobrium in the shape of a postbag of critical mail … there began to arrive in small pastel-coloured envelopes the venomous thoughts of the devout … some deployed abusive language, some said they longed to do her physical harm. A few of those claimed to know where she lived.

Sobering, too, to realise that there are other cases which fall outside the jurisdiction of judges like Fiona Maye, which would perhaps be even harder to bear. Cases reserved for the criminal rather than the family courts: children tortured, starved or beaten to death, evil spirits thrashed out of them in animist rites, gruesome young stepfathers breaking toddlers’ bones while dim compliant mothers looked on, and drugs, drink, extreme household squalor, indifferent neighbours selectively deaf to the screaming, and careless or hard-pressed social workers failing to intervene.

A slim volume, The Children Act, which came out in 2014, deals with a massive issue, and I highly recommend it. Last week supermarket Tesco was giving it away free of charge – presumably publicity for the film, starring Emma Thompson as My Lady, which comes out tomorrow. I plan to be there!

PS
Friday:We duly went to the very first showing this morning and had the unnerving but rather special experience of being the only people in the whole cinema! The film’s superb and well worth seeing.

Well, here it is: Independence Referendum Day up here in Scotland, but rest assured, I have no intention of writing about it. It’s been done to death already. Moving swiftly on …

As you know, much of my life has been spent grappling with difficult choices – not in politics, but in medicine – and blog posts on these issues aren’t always very cheery reading, so I’m delighted to bring you a fantastic story this week that’s sure to warm the cockles of your heart (whatever cockles are).

Last year I wrote a review about the book Hannah’s Choice on this blog. It tells the real life story of Hannah Jones who, aged just 13, hit the headlines back in 2008 and challenged the courts when she defied medical advice and chose not to have life-saving surgery. And what’s more her parents found the courage to let her.

But then, Hannah was no ordinary 13 year old; she had a wisdom and perspective borne of suffering. Painful medical interventions and sobering prognoses had been her lot from the tender age of 4 when she contracted leukaemia. And now, on the threshold of adolescence, sadly, her heart was seriously damaged and her organs were failing because of the toxic effects of her chemotherapy. The doctors said her only hope was in a heart transplant. But Hannah declined that option, choosing instead to go home and spend her days surrounded by the love of her family and friends. And she was allowed to make that decision. Wow! What a furore that stirred up!

As I reported on this blog, I was surprised and delighted when Hannah’s mum, Kirsty, responded to my review, and we’ve stayed in communication since. Why am I reiterating this? Because this week marks an amazing milestone.

Hannah starts at Aberystwyth University!

This is the same girl who went home to die. Except … she didn’t. Because a year later when her condition deteriorated she changed her mind and had a transplant, only this time the decision didn’t hit the front pages. Life, Hannah had discovered, was too precious to throw away. Those of us who review high profile cases in medical ethics are often limited to a brief period of time when the stories are newsworthy, and indeed I followed this case closely when Hannah was making her choices. But it’s really refreshing to get a longer term perspective. Especially one like this.

Huge thanks to both mum and daughter for giving me permission to share this news with you. I couldn’t be more happy for them. Cause for celebration indeed.

In that same blog last year I mentioned my brother Rob, who also survived against the odds when he was treated for leukaemia and things went badly wrong. He wasn’t expected to see his 51st birthday. Fifteen years later he has just marked his own milestone: retiring from work aged 65. We celebrated with him a couple of weeks ago.

Here’s to them both and all those, who like them, challenge the rest of us to take stock and re-think our preconceived notions, beliefs and opinions.

Every now and then a book comes along that challenges the reader at a very fundamental level. Izzeldin Abuelaish‘s book, I Shall Not Hate, was that kind of a read for me earlier this year. (Apologies in advance: this will be a longish post to do justice to a powerful story.)

Whatever your preconceptions or affiliations or prejudices, this is certainly not a book for the fainthearted, and the experiences this man recounts make one feel ashamed of ever having complained. You might perhaps remember Dr Abuelaish appearing live on TV reporting the massacre of his family in January 2009. This, and its subsequent reproduction on Youtube, precipitated him into the public eye. But let’s go back to the beginning.

The boy Izzeldin was born and raised in a refugee camp in the Gaza strip. Reading about his shockingly deprived childhood, it’s hard to believe this was less than five decades ago (he was born in 1955), taking place while we enjoyed the normal privileges and freedoms we take for granted in this country.

He vividly describes the grinding poverty that drove him to work for a pittance from a tender age to keep his large family in food, wearing cast offs from humanitarian aid bundles, bone weary and constantly hungry. As the eldest male he was also culturally required to shoulder responsibility for his parents and all his siblings.

‘Like most Palestinian children, I didn’t really have a childhood. Until I was ten, my family, which eventually numbered eleven (two parents, six boys – I was the eldest of them – and three girls), lived in one room that measured about ten feet by ten feet.There was no electricity, no running water; there were no toilets in the house. It was dirty. There was no privacy. We ate our meals from a single plate we shared. We had to wait in line to use the communal toilets and wait for water that was delivered by the United Nations. We were only allowed to fill our pots during certain hours of the day. We waited for trolleys to come by with kerosene or wood for us to buy to cook with. We were usually barefoot, flea-bitten, and hungry. We all slept together on a huge mattress that was hoisted up against the wall by day and lowered at night – except for the baby. There was always a newborn, it seemed, who slept in the same basin my mother used to wash the dishes, scrub the kids with a loofah, and clean the house.’

He was accustomed to seeing at firsthand the brutality of war, over and over again; he watched his meagre home being demolished to make a road wide enough for Israeli tanks to drive along; he was himself the subject of humiliating acts of cruelty and discrimination. All around him was hate and revenge. And yet, from an early age, Izzeldin believed in the common humanity of all races, of the potential for good, and the ‘hope for a better tomorrow’. He was, and still is, convinced that the majority of Palestinians and Israelis want to live in peace, to lead decent civilised lives, in safety and harmony. ‘It’s largely the leaders in both camps who continue to fight the unfinished battles of yesterday’, and the minority fanatics who carry out atrocities, who fuel the divisions, perpetuate extremist visions, and polarise opinion outside of the Holy Land.

Furthermore, he sees his own profession as uniquely placed to foster peace. Against all odds, thanks to his own determination, and his indomitable mother, he succeeded in his chosen career of medicine, becoming a recognised expert in obstetrics and gynaecology, infertility treatment, and public health. Race is irrelevant when you’re sick or in need of medical care, he says. He became the first Palestinian doctor to work in an Israeli hospital.

He also believes that if women and girls were accorded equal opportunities for health and education, they ‘could very well lead us to a peaceful coexistence.’ He certainly has reason to be grateful to the women in his own life. Not just his strong mother, but also his wife, left at home with up to eight children during his frequent absences for weeks, months, even a year, while he acquired the qualifications to break the vicious cycles of his inheritance.

The picture he paints of his country is a bleak one. Deprivation continues even to this day and everyone, including professionals like Dr Abuelaish, must endure them in the Gaza Strip. Water and sanitation services are on the verge of collapse; materials to repair the crumbling systems sit on an embargo list; the healthcare system is broken; access to hospitals and expertise outside the Strip is limited and not infrequently prohibited; a public health catastrophe is highly likely. Unemployment is extremely high; 70% live below the poverty line; farming and fishing face impossible restrictions. Exit visas are often denied for no good reason, limiting access to better lives and opportunities. All contributing factors in the escalation of hostilities in this volatile region. ‘It’s so easy to incite the people with the misery they’re in.’

But this book is not principally about the Middle East tensions, it’s one man’s personal crusade against seemingly impossible odds. Because a successful career didn’t render Dr Abuelaish immune to personal suffering. His nephew was deliberately shot in the legs and seriously disabled. Then his wife, Nadia, was diagnosed and died from leukaemia, all within the space of two weeks, leaving their eight children motherless, and Izzeldin a widower at the age of only 53. And then the worst catastrophe of all happened.

The Abuelaish family were desperately trying to regroup after Nadia’s death at the end of 2008, when the Gaza War erupted: an ‘insane assault‘ lasting 23 days. From the Palestinian perspective, Izzeldin calls it a ‘crazy annihilation‘ of the innocents. For those three weeks the family lost their faith in humanity; ‘God and each other’ were all they had left as they clung together waiting for what was to come. Then, on 16 January 2009, just twelve weeks after Nadia’s death, an Israeli tank blasted shells into the girls’ bedroom, blowing three of Izzeldin’s daughters and a niece to pieces. A tragedy so enormous and harrowing that it’s hard to even comprehend it.

Yet this man, their grieving father, has devoted his life to treating people on both sides of the conflict equally, and actively fostering understanding and reconciliation. His steadfast faith (he’s a Muslim), compassion and strength of character are at once humbling and awe-inspiring, and his book is one of the most powerful testaments to humanity triumphing over tragedy I’ve ever read.

‘We all need to understand that there are evil people in every country, every religion, every culture. But there is also the silent camp of people in every country who believe, like I do, that we can bring two communities together by listening to each other’s points of view and concerns. It’s that simple. I know it is; I’ve been doing it for almost all of my adult life. Look at the Middle East, the bruised Holy Land, and its generations of hatred and bloodshed. The way to replace that is with dialogue and understanding.’

The terrible massacre of these innocent girls inspired renewed and widespread calls for revenge but, even in the depths of his devastation, Izzeldin knew that ‘hatred is an illness. It prevents healing and peace’. Besides, no amount of retribution would bring his beloved children back. Instead he writes: ‘This catastrophe … has strengthened my thinking, deepened my belief about how to bridge the divide. I understand down to my bones that violence is futile. It is a waste of time, lives and resources, and has been proven to beget more violence. It does not work. It just perpetuates a vicious circle… To find the light of truth, you have to talk to, listen to, and respect each other.’

And he extends the challenge to us all: ‘… wiling is not enough. We must act. It is well known that all it takes for evil to survive is for good people like you to do nothing.’ (my emphasis).

[You can see an interview with Dr Abuelaish here which challenges him on some of the points in his book.]

Memories and emotions relating to my brother, Rob, have been flooding back this week. I’ve been reading Hannah’s Choice by Hannah and Kirsty Jones (assisted by Megan Lloyd Davies), a book I’ve had on my wish list for ages but only just recently bought. I read it in one sitting, and then I dug out the letters Rob wrote to me at the time of his illness, and read them again too.

In 1997 Rob was diagnosed with leukaemia. And in the ensuing months he faced some of the biggest questions of his life. Should he go for potentially dangerous treatments – chemotherapy, bone marrow transplant – or not? When one course of action failed should he go back for more? As a fully competent adult in his forties, he was very aware of the relative risks and consequences of the different options. There were no easy answers. Decisions he made would have implications, not only for him personally, but for his young family too. I knew those risks intellectually, but even so I was unprepared for the emotional impact of accepting his choices and then seeing him develop serious complications and battle for his life. I often asked myself, what would I have done in similar circumstances?

But imagine weighing up such risks and benefits not for yourself but for your child, a child who is not yet a teenager. And then imagine if she resolutely maintains she wants to make her own decisions … but her choices don’t square with yours. That’s Hannah’s story.

I well remember the furore raised by her personal decision not to have a heart transplant, which hit the headlines in 2008. Her choice sparked a vigorous debate about a child’s right and ability to make a life-or-death decision. I was much exercised by the arguments at the time, but somehow I’d either missed or forgotten (not uncommon these days!) what happened after she went home to die, so the ending of the book came as a surprise to me. In case you’re in the same position I won’t spoil it for you.

Hannah faced not one but two life-threatening illnesses: leukaemia when she was four years old, severe heart disease (cardiomyopathy) subsequently. The firsthand account of her treatment makes harrowing reading and reminded me vividly of the agonies my brother endured.

‘Hannah started being sick up to six times a day and had terrible diarrhoea. Her fingernails and toenails had also fallen out to reveal raw red nail beds which I dressed each day with tiny pieces of paraffin gauze which had been chilled in the fridge … She also needed gauze pads placed under her heels, shoulder blades and bottom to stop sores developing because her skin was peeling – the new skin so painful that she had to be handled like a burns victim. For several days we could hardly touch Hannah because she was in too much pain, and even her mouth bled – blood caking her gums, teeth and lips which I tried to wipe gently away.

As I did so, I wondered how high a price anyone could pay for being cured, let alone a child. Hannah was wracked with pain, and although I wished I could feel it for her, I couldn’t.’

The price paid is indeed high. And there are no guarantees.

Hannah grew to hate hospitals. And she hated being treated differently. She didn’t want the ‘Chitty Chitty Bang Bang looks’; she wanted to be told off when she was naughty; she desperately wanted to be ‘normal’. Meeting other children with limited life expectancy she said: ‘… we talked about the here and now, not the future, and that’s what I like to do – take every day as it comes, which means you mostly enjoy them instead of worrying.’

Sadly, early into her treatment things went unexpectedly and badly wrong. After two of the recommended six rounds of chemotherapy to treat her leukaemia, Hannah’s heart became seriously damaged by the toxic drugs – a very rare side effect. Now her parents were faced with an even more stark choice: stop the chemotherapy and risk the cancer returning, or continue with treatment but risk further damage to the heart.

‘How could Andrew and I decide to stop the treatment that was meant to be saving Hannah’s life? But how could we continue the chemotherapy knowing we might risk Hannah’s health in another way? Surely it was an impossible choice?’

A compromise was reached. Hannah had one more round of chemotherapy. The leukaemia didn’t return but the heart problems increased. Her kidneys started failing. She was a desperately sick girl. As she deteriorated her only hope was a heart transplant. By now though, Hannah was herself older, 12, then 13; she had her own views. She’d grappled with illness since she was four, she’d spent much of her life in hospital, she knew pain intimately. And she knew she did not want to remain in hospital; she did not want a heart transplant. She wanted to go home, to be amongst those she loved, to enjoy the simple pleasures of childhood while she could. As she was quick to clarify, she wasn’t asking for the ‘right to die’, but for the right to live her life in the way she wanted – at home with her parents and her siblings.

Her parents showed amazing courage. In spite of criticism, they listened to their daughter, they respected her opinion.

‘… I’d learned that children who have felt death whisper at the edges of their world can become wise beyond their years.’

‘Her gaze was that of an old soul, staring out from a child’s face. It was the same look she had given me a long time ago when she had fought for her life the first time, and in moments like those I understood that Hannah had been to places I could never know.’

Whatever her decision, they told her, they would support her. Indeed Kirsty, her mother, an experienced nurse herself, went further. This journey alongside Hannah had taught her powerful lessons about life and about parenthood, she said.

‘I remembered the moment she was born, the feeling of the tears slipping salty down the side of my face as I held Hannah for the first time. Back then I’d known how lucky I was to have her after waiting for so long. But it was only now I knew for certain that she was not mine to keep or lose: Hannah, like every child, was a gift, not a right. I must cherish her for as long as she was mine.’

But a locum doctor couldn’t accept Hannah’s decision, and he set in train a course of action that added considerably to the strain the family were under. Hannah was threatened with a court order to remove her from the custody of her parents and force her to have the operation. She was required to make her case alone to a child protection officer.

However, whilst there were plenty of strangers who disapproved of their choices and had no hesitation in saying so, the Jones family were supported strongly by the healthcare professionals who had known them throughout the years of their ordeal. Hannah herself, though she hated being in hospital, found peace and comfort in a children’s hospice. When she heard about MPs fiddling their expenses, she drew up a list of things she’d do if she were Prime Minister. Top of her list was: ‘Make the government pay for children’s hospice care like Acorns because they don’t and I think that’s really bad.’

Out of the mouths of babes …

This book is an amazing story of courage and love. And challenging. Would I have had the strength to let my own child of 13 decide to forgo the one treatment that offered hope of a 15th birthday? I don’t know. How can we know until we’re faced with such a situation? But having read this book I have nothing but admiration for the pathway this family chose.

Time to return to the topic of that sticker I mentioned a few weeks ago, as seen on The Midwife’s Confession: ‘As good as Jodi Picoult or your money back.’ Similar to the one on my own latest novel: ‘If you like Jodi Picoult you’ll love Hazel McHaffie.’ Seeming even more relevant now because at my book launch last week I was introduced as ‘Scotland’s Jodi Picoult’!

Question is: Is the comparison a good or not so good idea?

I confess I’ve only just discovered Diane Chamberlain, the author in question. My daughter gave me one of her books for Christmas, and I bought a second one on the strength of the blurb on the cover. I read them both in four days during the Christmas holiday break.

The resemblance is obvious from the outset – before you even open the book. The pretty feminine covers. The personal challenge: ‘A lie will save one family, the truth will destroy another. Which would you choose?‘ Both very Jodi Picoult.

So what about inside? Was this author as good? Would I be due a refund? Should I be glad or sad that my own latest book has a similar slogan?

Tara, Emerson and Noelle are close friends, so the two younger girls are devastated when Noelle is found dead after taking an overdose of pills. But as they sort her possessions and talk to other people, facts come to light which show them that the Noelle they knew was a fiction.

When they unearth a letter revealing a hideous secret, they are torn by indecision. If they tell the truth it would destroy a family; but by maintaining the lie they would be perpetuating the grief of another. Add to this a twelve year old with recurring leukaemia loaded with steroids and fighting for her life; a dead baby; surrogate pregnancies; and you have a flavour of the intense emotional and psychological undertones of this story.

The multiple first person voices style is very Picoultesque, but there the similarities end. No court scenes or legal ding-dongs. No stereotyping. No homespun philosophising. Indeed, Chamberlain’s psychology is altogether much more convincing and less contrived than Picoult’s. Not surprisingly perhaps since she’s a trained psychotherapist.

So what of the second of her books that I read? Breaking the Silence is written very differently. All in the third person too. Instantly I feel a lift of spirits. Here’s an author who rings the changes. Who’s not formulaic or predictable. No rut in sight. My kind of gal.

The story weaves between the present for astronomer, Laura Brandon, and her daughter, Emma, and the past life of former nurse, Sarah Tolley, now an old lady with Alzheimer’s.

Moments before his death, Laura’s father makes her promise to visit Sarah, who’s in a retirement complex, but whom she’s never even heard of before. As a consequence of her doing so, however, Laura’s husband commits suicide. Her five year old daughter, Emma, witnesses the shooting and now refuses to talk and is clearly terrified of men. On the advice of a child therapist, Laura contacts Emma’s biological father, Dylan Geer, a hot air balloonist, who was unaware of her existence but becomes mesmerised by this mute child.

But as this father-daughter relationship blossoms, Laura becomes increasingly obsessed by the stories emerging from Sarah’s fading memory. She starts to unravel a tale of love, despair and a terrible evil that links them all.

Chamberlain’s training and experience in psychology have given her a genuine understanding of how people tick, how relationships work, helping to authenticate the actions and reactions of her characters. They ring true. Having had to observe professional confidences herself (like me), I think she understands the capacity of some people in positions of trust to bear a hefty burden of secrets, and the inability of others to do so. Lies and deceptions play a large part in both books.

Chamberlain says of her novels that they are ‘part suspense, part mystery, part romance and one hundred percent family drama.’ A fair assessment. The suspense and mystery elements keep the pages turning effortlessly. I was particularly gripped by the stories of the CIA government approved mind-control experiments that took place in the 50s and 60s in psychiatric hospitals in the US, about which I’d heard but never understood in this intensely moving way before. No wonder this was the inspiration for Breaking the Silence. Very clever.

But I must confess the coincidences in both books stretched my credulity somewhat, especially in The Midwife’s Confession. OK, they tidied up the story lines but they lacked plausibility for me.

So, will I be reading more Chamberlain? Probably. (And keeping my fingers crossed that she doesn’t pall like Picoult.) Will I be claiming a refund? Happily, no.

What then of that controversial sticker: did it help or hinder? Well, it meant the book caught in my antennae initially, which was good. Although for anyone who really doesn’t care for Picoult, it could have had an unwarrantedly negative impact. So swings and roundabouts there maybe. It also made me compare the two authors throughout, which had pluses and minuses for Chamberlain. But for me overall Chamberlain came out of it well.

And forSaving Sebastian? At the moment the jury’s still out. Time will tell. And your input … please!